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Sunday, October 20, 2013

After what seemed like hours of tossing and turning, I simply gave up. De tangling myself from the comfort and warmth of my covers, I stretched my tired legs and got out of bed. The shock of the cool hard wood floor beneath my naked feet sent shivers up my calves, leaving me scrambling in the dark for my slippers. Sleep was just not going to happen for me right now, no matter how hard I tried to free myself. At the moment I was helplessly trapped in a flood of visions. Visions that danced around in my head, twirling and bouncing with robust energy. My mind raced with thoughts and ideas. Things that I had not yet done, and hoped to do. Events that I had not yet had the chance to partake in with my sons. People and places I wanted to visit. Projects around the house I had not finished or even started. Most importantly for the current moment though, I was in need of some comfort. I was loosing in my battle of self control and found myself falling victim to concern and worry. Yearning to understand why I was now in the middle of the night so absorbed in the reality of things. Desperately wanting to change the obstacles that I felt threatened my relationship with happiness. Hoping to find a solution for everything I knew that was not quite right, in my life.

As if I was a piece of metal being pulled by a magnetic force, I could no longer fight my craving for a little self gratification from the realizations that haunted me. Truthfully I was having a personal crisis and now it was insisting that I get out of bed in the middle of the night to secretly indulge in a form of self consoling ritual. What I wanted and needed right now was to curl up on my recliner sofa in the in the wee hours of the night, while the world slept. Wrapped snuggly in a knitted throw in front of my fire place, enjoying a bowl of my favorite ice cream, and become lost in a romantic novel. A selfish past time that I found myself becoming more and more attached to lately.

It was not to long after surrendering to my desire, that I soon found myself with heavy eyelids, slowly falling into a dreamy state, that was finally freeing my busy mind of the real world, at least momentarily. Abruptly I was awaken by a mix of dreams. Still holding my book in one hand, I glanced around the room. I was alone. Nothing seemed unchanged. Everything was just as I had l remembered, before shutting my eyes. I shifted my weight to let the chair rise forward. Lifting my head, I noticed my hair felt dampened and my throat dry. I looked toward the clock just off to the side of my fireplace, where flames wildly danced, it was now 4am. I had been a sleep for only an hour. Sitting there alone, ever so slowly pieces of my dream began to flash in front of me.

I wanted desperately to go back. Back into the visions that had held me captive for the past hour. To afraid to move, I sat embracing the sheer longing of what truly haunted me. I had just seen my Cody walk in my dream. He looked at me smiling. As he took a step toward me, he out stretched his hand. Reaching for me as he raised a foot, in a very carefully calculated step. Around him illuminated a light. Soft and glowing as though golden angels were surrounding him. I froze in elated joy as he came towards me step after step. Unable to move holding my breath, wanting the moment to never end. As I raised my hand to grasp his, I saw I held a small scissor. It resembled one that I kept in my kitchen. Looking down closer I noticed my thumb had become stuck in the small finger opening. In anguish I tried to pry it from my thumb. Frantically attempting to shake it from my hand so I could fully extend my arms to Cody. We were alone and I felt a rush of desperation, wishing I had help. As the scissor fell, so did Cody. Slowly he fell into my arms, never taking his eyes off mine as he silently slid downward.

It has been quite a while since I had a dream where Cody and Josiah walked. But the memories of a time not all to long ago, when this was possible, is still magically kept close in my thoughts. There are many possibilities that may have provoked my recent dream of Cody. Without to much analyzing I can sum it up that there is a very deep part of me that struggles constantly with accepting the future, mine and his, together. I can only say that I feel blessed to see him walk even if it is ONLY in my dreams, and even if it is because, I am struggling with some very hard harsh realities. Duchenne and its unrelenting progression.

It took me a while to fall back to sleep again. Clutching my romance novel once more until my eyes felt heavy, I surrendered, happily to my dreams. Hoping that some how very soon I would see my sons walk again even if it was only in my dreams.

I was surrounded by smiles and laughter. Feeling especially happy to be enjoying a night out with two of my three sons and a few friends, who also were able to attend the nights hilarious performance of " Sideways Stories of Wayside School. We were part of a small crowd with a rather intimate yet casual setting that made a full circle around the stage. I could not remember the last time my sons had been seated in the very front row, with their wheelchairs, for any event. With just an isle between us and the stage, it almost felt as though we ourselves, were part of the cast of characters.

Occasionally soft laughter escaped from my sons, Josiah and Cody along with their friends as they watched the play. I peered down a few seats off to my side, to the row in front of me, where my middle son Cody sat in his wheelchair next to his friend, Kayla. Feeling very happy, he was able to enjoy a fun night out with good friends. Ever so sweetly I watched as Kayla reached over to place her hand in Cody's. I was momentarily overwhelmed with my own happiness as they sat with their hands locked, watching the play. A triumphant moment to me, that they shared, unknowingly. My heart filled with joy instantly to see Cody experience a simple pleasure of being a young adult, sharing a special moment with a female friend. A quote as we might say "normal" moment, many of us in the DMD world dream of our sons having.

Not to far off from where we were gathered to my left, another family sat. A young teenage boy in a wheel chair, accompanied by his mother and a young girl most likely his sister. It was not the sight of them that had drawn my attention, but rather the occasional sounds that escaped from the boy. It was very apparent he too was enjoying the play as much as we were. His enthusiasm came out in little sounds that were discreetly attempted to be quited by his mother. While still basking in my own joy of watching Cody and his beautiful friend I could not help but once or twice glance over at this other family. I was feeling some what drawn to this mother, out alone with her two children. Most likely just wanting to offer them a night of enjoyment out. Some family time spent together away from home. Each time her son would make a small chain of snorts or chuckle I could almost feel her anxiety, as she diligently tried to coax him into silence. I could see his sister slowly shrink behind her mother, as if in someway perhaps attempting to hide in embarrassment as he would vocalize his emotion. A part of me so desperately wanted to somehow let this mother know I understood the anxiety she might be feeling right now, as she tried to shush her son. So many times I too had also been in similar situations, when my own sons did not exactly act in a way that would be socially acceptable. Cody and Kayla both were expressing their own enthusiasm for the play, in occasional burst of laughter and words of cheer.

I looked around the theater to see if there were any people who openly displayed discomfort in being in the presence of our special children, after all this private performance was for HOPEKIDS and family and friends of the actors. As I expected I saw none. The wonderful cast continued with their delightful performance unaffected by our jubilant attention. In my heart I still felt so deeply for this mother and the discomfort she seemed to feel. Just like her, I was there wanting too spend time with my sons in an entertaining activity. I offered a smile from across where I sat. Hoping that somehow if at all possible she could feel some comfort. Like any parent with a special needs child it is not an easy task in taking them on an outing. This mother undoubtedly had her own struggles in bringing her son out and she had my admiration for loving her son enough to share him with us.

Sunday, October 6, 2013

His head hung down as he walked away from me. In silence he climbed back in to his truck, keeping his eyes from meeting mine, but still looking back at where I stood alone. I watched as he slowly backed out of my drive way. I had nothing but apathy for the the man. He had fallen so low, to a place I could only try to imagine was like. A place that seemed so empty and void of all that held beauty and truth. A place where he could only blame himself for falling into. A place where love seemed lost.

I had moved on and I could see he struggled with accepting that. Somehow in his heart he held on to hope. Hope that we would somehow once again reunite in this journey. It was in that moment I realized all the anger I had held in my heart from the years past had melted away. I had nothing left inside to offer him accept, pity and sorrow. Sorrow because he now understood what he had walked away from years ago. Pity because I knew he would never be enough for me or his sons ever again. The love he so unwillingly refused to give back years ago, now tore at him. The faith he had lacked then had put him in the lonely place he was now. What he wanted most right now was the furthest from him, than it had ever been, with no hopes of ever being regained again.

I turned to walk back inside my house. The house I had manged to save for and buy myself. The house I had had adapted to meet the special physical needs of my sons. The house through sacrifice and hard work I had turned into a home for my three sons and I. There was no presence of him in my personal world. I smiled looking at the photos decorating my walls that clearly displayed me and my sons and the triumphs we shared together. I had made a place for us in this world on my own, that left me free and in control. My home now beamed of the world I created and shared with my three beautiful sons. The path we had been traveling on for 9 years had brought challenge but also great reward. I was pleased with what I had accomplished on my own and embraced the strength that had grown with in me, facing all the hurdles of single parenting and especially raising two physically and mentally challenged sons by myself. We were together, my sons and I, and nothing could make me feel more proud. I had managed to give my sons a world that dared them to dream, that rewarded them for their efforts, above all that showered them with unconditional love.

Even though I felt even more free, now that I had finally let go of the hurt from my past, it did though feel strange and new. The dreams I had once believed in and had hoped would be my destiny at one time were now replaced, by new ideas and desires. The past buried, as if it had never existed. As my world changed I changed with it, in so many ways. I stopped in front of the mirror and glanced at my reflection. I looked the same, perhaps even better, but I had in fact changed inside so much, over the years. At times it even scared me, knowing how much I was willing to challenge myself and willing to sacrifice to give my boys the life I longed for them, on this journey.

I can not say that my life has worked out even close to the way I imagined it would. Even now to day, I am most of the time surprised at the places I am led to and the adventures I embark on with my sons. What ever the journey I can only pray I will be blessed with the strength to be all that my sons will need.

Saturday, October 5, 2013

I jolted upright, almost throwing the covers to the floor. Moving before panic and fear could begin to flood me. Glancing only for a mere second towards the monitor and its bright green flashing light, as I scrambled to my feet. I watched as three squares flashed again, which alerted me even more- that I had definitely heard something from upstairs. With in seconds I was running down the hall in my bare feet with my hands out stretched slightly in front of me, helping me to to fend through the darkness. It dawned on me at that moment I had not been summoned to roll either of my sons over or assist with a night bladder release yet, very unlike them. That thought startled me even more. Worry fought to control me. The night air caused me to shiver slightly as I swiftly moved, and it was only then that I noticed my long hair and tshirt felt quite damp. Not allowing myself any time to waste on any more thoughts, I continued rushing toward the stair case that separated Cody and Josiah's bedroom from mine. A soft glow of light from the outside street lights peeked through the open blinds of our front bay window, illuminating the stair case slightly, helping to light my way just enough to keep me from missing a step. I looked up toward their bedroom from the bottom step, the distance seemed so utterly far. Fear threatening me now, I took the steps two at a time. As I reached the hallway just outside the room they shared, almost instinctively I paused for a second at the closed door, listening for any sound, but hearing nothing in return. My heart now pounding and fear closing in on me I quietly turned the knob. Urgently wanting to rush in to my sons sides, but also deeply aware that my own panic could frighten them from a deep sleep if somehow this has all been a mistake, a panic on my own behalf.

I opened the door, slowly tip toeing, first toward my youngest, Josiah, where he laid, quietly sleeping in his bed. Curled on his side, his breathing steady and slow, a peaceful rhythm. I stood over him looking down as he slept. What ever I heard, if it had been him, was in no way now affecting him. Peacefully he laid there sleeping un-aware of my presence. I turned toward my middle child Cody. Whose bed was across from where Josiah lay. Walking toward him it seemed he also was completely absorbed in a peaceful somber. I stepped back looking at both of my beautiful sons, puzzled at what I had heard or not heard. Clearly I had seen the blinking lights. I was convinced sound had came from this part of the house, this room.

I lifted my damp hair from the nape of my neck, as I stood in the dark,wanting to make sense of what I was doing in their room now. Listening to the quiet I waited, the house was still. Pulling the v-neck of my tshirt away from my collar bone, I now became aware I was more than just damp. No doubt a night sweat. A chill caused me to shutter, I decided I would need to change my shirt before returning to my own bed. Then as if on cue a sweet voice called out to me. Mom, mom I need to go to the bathroom my stomach hurts, a second voice followed with I need to be turned over please.

I smiled to myself, apparently my motherly instincts and fear are present even when I am in a deep sleep. I felt even a bit happy that in my semiconscious state I was alerted "not being called in the night was cause for alarm'. However I felt good. I was where I needed to be, even though very tired, before I knew I would be needed. It did not matter to me how or why, I was wildly awaken during the night, just that I was so deeply connected to my children. Cody only needed to use the bathroom, and soon was comfortably resting again. As I left their room I walked through my sleeping house. All the windows and doors are were all securely locked. Even the dog laid curled up a sleep at Josiah's feet, on his bed.

I am sure I have many mom friends who can share in this. The calls in the night and "for many of us it is many calls during the night" that sends us rushing to our child's side. The sleepless nights when we are awaken so many times, that we just give up on the notion of a peaceful sleep, entirely. The panic and the fear that is aroused, because deep down inside, a fear lurks in our subconsciousness. A fear, that one day this call will be accompanied by illness or not be heard by us in time. The many sleepless nights of staying up with a sick child. An almost agonizing fear that it will one day cease to happen at all. I have no doubt I have been given an inner gift. A sense that alerts me in my sleep to come to the aid of my sons. It almost seems, that all the years of caring for my sons has helped my body and mind work as one to alert me. That not hearing a call from my sons in the night is cause for "alarm". Feeling beyond tired at times, but still so grateful, that it is possible, in rare instances to be present even before they need me.

I want to embrace in unity, all of us who can share in the sleepless nights, because of a child in need. My heart goes out to us all for the "mom calls" and in some cases the" dad calls" in the night and during the day. I pray that we all will have the courage and the strength when the call that does not happen sends us running.